I have been diagnosed with Vasculitis now for just over a year and I am still taking about twenty odd tablets per day and I know everyone says it’s going to take years to get right but…
I was sitting down yesterday when my wife said oh my god what have you done. I looked down and my arm was bleeding in two places. No cuts, no scratches or knocks. Normally I have these blood vessels burst under the skin but this time they have burst straight through the skin! Consultant says that the steroids have made my skin thin.
Whatever next???
Dave
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Dave34
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HiI was on 40mg for months but now down to 15mg. I also take 2 grams of mycophenolate, beta blockers, anti depressant amongst other tablets to counter the side effects. The thing I can’t get my head around is that taking all this medication and I’m still getting Vasculitis symptoms.
Hi Dave, I was diagnosed just over three years ago, Vasculitis MPA anca confirmed by kidney biopsy. Had chemo treatment once a month for five months at the beginning.Still on steroids now on 4mg a day, consultant has tried reducing them but each time I just go downhill, also on immune surpressants, plus others 18 a day in total. Skin is thin and only have to slightly knock my arms and get massive blood bruising under the skin. Fatigue and tiredness are my biggest problems now, have good days and bad days. When If have a good day and do a few jobs in the garden I wear arm guards a mate recommended them, just pull them on like a sleeve there only a few quid and available from Amazon. Its a long haul mate, good luck Rob 73
My consultant was keen to get me off steroids, so gave my body a good kicking with immunosuppressant transfusions. I am now in remission and long may it continue.
Hi Dave..I have been on steroids for 2 years now although I have weaned down substantially from where I started on 40. I have also been on myco and most recently aza until I started on Mepo last year. The truth is that the steroids will make your skin thin and cuts and bruises are a common occurance..I even cut myself on a carrier bag and shaving with a razor is out on the question unless you are an extra in a horror movie! The crucial thing is you are in remission so long as your major organs are in good shape..you will still get minor flare ups all the time. Well thats my experience at least. All the best Lev.
Hi Dave, Similar story. I'm in remission now after a very wild year and just completed a 14,000 ft. peak with my daughter in Colorado and ran a big 10k road race...there is hope. I shouldn't be able to do this at this early point in recovery being diagnosed on 12 months ago.
But... 60mg of prednisone early on did a number on me. It did help my extremely painful nasal and head symptoms where I could function again. But a early arm bruise became a open wound that didn't heal for 4 months. I also didn't know a had a small low GI tear that developed into a fistula that was communicating with my hip and thigh over 2 months which lead to massive pyomyositis leading to life threating sepsis and 2 surgeries that left me with permanent significant loss of hip and thigh muscles. I look like a shark got ahold of me. I also still have another surgery to hopefully resolve the GI fistula ( third surgery).
All that said, I'm in remission and off prednisone that caused the hip and GI problem but it also was necessary at the time since I was not doing well.
I will ask for Avacopan if I need help with flares in the future. It's a new drug to replace prednisone that is showing great help especially in the vasculitis community. Also called Tavenos I think.
I had exactly the same Dave. I have EGPA Vasculitis, 26 tablets a day, turned into a zombie, skin paper thin, bedridden 4/5 days out of 7, ended up in hospital recently with 204/137 blood pressure and then left for two hours in A&E like a dummy. I’ve lost complete faith in my so called specialist at Addenbrookes. I took it upon myself to try alternative medicine,well off my own back I’m down to 9 tablets a day and getting a bit of normality back. Look into The Universal Antidote that NASA use . A chlorine dioxide solution that cleanses the body and it’s completely harmless,although you will be told otherwise by so called specialists . healthrevolutionsolution.co...
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Skin and bone problems after steroids use
